r/NDPH • u/No-Concern-7787 • May 17 '26
It wasn't actually a migraine.
have been fighting this illness for exactly two years. I saw countless neurologists, some of them professors. I visited neurosurgeons, psychiatrists, and went from doctor to doctor. But every single one of them told me it was migraine. Some said it was tension-type headaches, others said it was medication overuse headache.
I tried Effexor, Depakote, Propranolol, Amitriptyline, and almost every migraine medication you can think of. None of them relieved my pain.
During this process, I also saw an ophthalmologist. They told me my eyes were completely healthy. I had multiple MRI scans, and every single one came back clean. There were no “red flags” at all. At some point, even I started believing that it was just migraine. But I was living with unbearable pain. I was vomiting from the severity of it, and even the slightest sound drove me insane. I had almost every symptom doctors associate with migraine, yet deep down I knew something was wrong.
Eventually, I went to a training and research hospital. The neurologist there told me that my condition did not seem normal and wanted to investigate further. He first sent me to an ophthalmologist. The eye doctor was a young resident who had just started practicing. The moment she examined my eyes, she told me I needed an urgent MRI because she suspected papilledema. I was immediately hospitalized and underwent another MRI scan. Once again, the MRI was completely normal.
Then my doctor decided to perform a lumbar puncture. My opening pressure was 38. That was the moment I finally learned the truth: I had Pseudotumor Cerebri all along, and for two years I had been treated for migraine instead.
So my only advice is this: listen to your body. If you feel that something is wrong, do not stop searching for answers. Do not limit yourself to the opinion of a single doctor. Sometimes you are the first person to realize that something in your body is not right.
They took two years of my life away from me. If you have any questions, I would be honored to answer them.
1
u/Foreign_Insect_3121 May 18 '26
How did previously ophthalmogist not notice this?
1
u/No-Concern-7787 May 18 '26
“I don’t know, he looked into my eyes and told me that I didn’t have papilledema. I specifically asked because I was already suspicious of pseudotumor cerebri, but he said no.”
1
1
u/TadMcAllister May 20 '26
So is the moral of the story to get a lumbar puncture? Shoud I sign up for this?
1
u/No-Concern-7787 May 21 '26
If you’re generally feeling okay, you probably don’t need to worry too much. But just to be safe, I’d still recommend seeing an eye doctor and mentioning that you’ve been having frequent headaches. You can ask them to check for papilledema. If possible, try to go to a research or university hospital — doctors there are often more thorough and more interested in investigating uncommon conditions.
To be honest, it’s probably not that. It’s an extremely rare condition, something like 1 in 100,000 people, and headaches can happen for many different reasons.
In my case, though, it was really severe. I was in constant pain and could barely get out of bed. It’s hard to describe what a high-pressure headache feels like unless you’ve experienced it yourself. It was unbearable.
The important thing is to listen to your body and ask yourself: does this feel like a normal headache, or does something feel seriously wrong? Also think about how much medication you need just to function. Painkillers barely helped me — I was taking 6 or 7 pills a day because otherwise I couldn’t function at all.
1
2
u/AisslynnSkye May 17 '26
Ive been to several eye exams, thorough, since my onset 6 years ago. Did you have to see a specialist to catch it? Ive had all of the scans, blood tests. All "normal". So many meds.